"That little girl never gives up. She's been a fighter and a boss from day one."

Today, against all odds, Kaylie Kapperman will celebrate her second birthday, with perhaps the greatest gift of her young life just months away.

The milestone was practically inconceivable for a girl born with a rare disease that necessitated the removal of both of her kidneys and a start to life that has made C.S. Mott Children’s Hospital and the Ronald McDonald House practically the only homes she’s ever known.

Kaylie Kapperman has defied the odds to celebrate her second birthday. "That little girl never gives up," her grandmother said. Courtesy photo

Today, Kapperman and her family eagerly anticipate the prospect of a kidney transplant — and a relatively normal life — as soon as this spring.

“They suggested Kaylie be terminated at five months pregnant,” said her grandmother, Candy Crousore. “She has been through so much. She’s been put at that doorstep three different times…

“She’s gonna walk out of this and never look back. But are we surprised? Absolutely.”

Kapperman was born with polycystic kidney disease, a disorder in which the kidneys — organs that play a vital role in filtering waste from the bloodstream as urine — are overcome with cysts and fill with fluid. Kapperman’s kidneys at birth were three times the size of normal kidneys, had no real function and were pushing her lungs out of the way, Crousore said.

The disease occurs in roughly one in 20,000 individuals, and while it can be fatal in the first months of life, prospects for survival have markedly improved over recent decades, according to the PKD Foundation.

Kapperman’s own journey has been perilous from the start.

Born at ProMedica Toledo Hospital (her mother, Ashley Bean, lives in Antwerp, Ohio, near the Indiana border), Kapperman was whisked to the University of Michigan Health System via helicopter after she urinated two hours after being born — the first and only time she’s been able to perform that bodily function.

At Mott, doctors put the infant on peritoneal dialysis, using her stomach to filter blood instead of her kidneys.

Then, when Kapperman was just 3 months old, she contracted a bacterial infection from the catheter line in her belly. The infection sent her into seizures and caused a stroke. The baby with the unfailingly persistent, sassy outlook entered a coma from which doctors believed she would never recover, Crousore said.

Only there was a grave new complication: the medication doctors had prescribed to treat her infection had perforated her bowels and intestines. Doctors said there was nothing that could be done.

“They didn’t even close her up” from surgery, Crousore said. The doctors told Crousore and Bean to love their little girl through the night. They had her baptized there in the hospital.

Then, later that same night, doctors found an extra 5 inches of intestine they thought they could use to bypass the stomach and put Kapperman on hemodialysis to keep her alive. It worked. (Medical staff declined to discuss Kapperman’s case with The Ann Arbor News due to patient privacy laws.)

Kapperman has now been on hemodialysis for 21 months, undergoing treatment three days a week for three hours a pop at Mott. She stays at Ronald McDonald House with her mother and grandmother when strong enough, and she’s been able to travel home to Ohio with her mother to visit family when her treatment schedule permits.

“She’s your normal, busy, sassy toddler,” Crousore said by phone recently. “She’s not confined in any way in a hospital. She’s here with us now. If you didn’t pull up her shirt you wouldn’t know anything was different.”

Crousore, 52, lives on a disability payment and sold her home in Fort Wayne, Ind. following her granddaughter’s illness. Bean, who is 22, gets by on Social Security payments through a disability from a chronic condition. The family relies heavily on the Ronald McDonald House to cover costs not covered by their insurance plan.

“The importance of the Ronald McDonald House mission to provide housing for families that are away from home while their child is sick has been even more apparent with the Kapperman family,” Executive Director Kim Kelly said.

“As Kaylie is about to reach the milestone of a transplant, we are happy to have been a part of this journey with the family and look forward to the day that they may all go to their own home.”

Doctors told family members they have lined up six possible kidney donors but that Kapperman’s body needs to be ready for the transplant. Doctors have told the family that if the procedure is successful, the kidneys should start working immediately, Kapperman can be taken off dialysis, she can begin eating by mouth, and can likely go home after a month or so.

Crousore credits her granddaughter’s love, faith and determination for bucking the odds.

“That little girl never gives up,” she said. “She’s been a fighter and a boss from day one. She’s incredible. She’s more alive than me and you. She’s got the happiest little personality and spirit, never grouchy and grumpy. She’s a character.”

Find more information about the Ronald McDonald House, and how you can contribute, at rmh-annarbor.org.

Contact Sven Gustafson at sventg123(at)gmail(dot)com, or follow him on Twitter.